There are many reasons a behavior plan (or BIP) may not work. Perhaps the plan did not have clear, specific goals. Maybe the tracking of progress was overwhelming. Sometimes, rewards are too abstract or too far into the future for a student be motivated by them. Occasionally, the goal is too ambitious. (I have seen IEP’s written with a 100% mastery criteria. Really? I don’t know anyone who does anything exactly right all the time!)

However, what if you have a good plan in place that does not fall victim to any of the common mistakes listed above? If you have a solid plan and that plan does not seem to be helping a child shape his academic or social behaviors, you have likely overlooked the most essential element: consistency. Without consistent application of expectations, consequences, and rewards, a behavior plan will not be successful.

This is especially true for students with Autism. Routine, structure, and clearly defined expectations are key for children on the spectrum. They crave rules and predictability. In fact, their brains search out patterns and rules within their environment as a means of understanding the world around them. For kids with ASD, a rule is very black or white. There are no shades of grey or “exceptions.” This is an area where rigid thinking can be a great benefit to a student. It is rare that a child with ASD will break a clearly defined rule. Living by rules provides comfort and security for children living with a central nervous system that tends to be in hyperdrive so much of the time. In situations where no rule exists, the child with ASD will frequently form his own set of rules in an attempt to establish order. These rules may not make sense to anyone but that individual. (Think: I will only eat green foods. The curtain must be exactly half open. I can only wear blue on Tuesdays.)

As adults, we have a responsibility to create that structured environment where the expectations and boundaries are clearly defined. We need to set rules that make sense and are the same for all environments. We need to consistently apply those rules. Every. Single. Time.

We all know kids like to test the limits. We all know at least one child who insisted on touching the hot stove to see for himself if it really was hot. The child touches the hot stove. It burns his hand. He does not touch the stove again. Unless, he has some reason to believe the fire will not be hot every times he touches it. If just once, he touches that stove and instead of producing heat, the stove produces a family trip to Dairy Queen, he is going to touch that stove as often as possible, hoping to reproduce that result!

The fire must always be hot! Even on a rough day. Even when you are tired. Even when the “trip to Dairy Queen” is easier than listening to your child scream or cry. The fire must always be hot.

When I train my staff on consistent application of rules, I tell them this truth. You can do something “right” and by the book 1,000 times in a row. Do it wrong just ONE time, and for the child with ASD, that becomes the new rule. For example, say you have a rule against eating food in the living room. Suppose you have followed that rule every single day for the past 8 years, without exception. Then one evening, you are exhausted from a long, hard day. Your darling son looks at you with those puppy dog eyes and you cave. The two of you cuddle up, eating pizza, and watching a Disney flick.

The next evening you are feeling yourself again, but your child has just carried his plate and Juicy Juice into the living room. You may be ready to go back to the “no eating in the living room” rule, but I promise you, he is not. By allowing it one time, you have created a new rule in your child’s world. When you try to explain this is not the case, he will not believe you. You have lost credibility. Furthermore, in his mind you are breaking the “new” rule; the one that says Dinner Shall Be Eaten With Mom On The Couch With Disney On The Television.

It is much easier to enforce a rule that has already been established and accepted than to try to get a child to go back to an old rule after he has been permitted to break it. Stay strong. Resist the urge to take the path of least resistance, even when it would be a whole lot easier in the moment. Teach your child that the fire will be hot every time. Either that, or prepare to move a mini-fridge in next to the old La-Z-Boy and resign yourself to a lifetime of Disney Dinner Theater.

Ann:

Today, in reading, we talked to our students about living in their Autism bubble. We asked them how many hours they spend with their family in a three day weekend. Two students said “zero.” Another student said a few hours and one said he begs for time with his family, but they are too busy.

We asked them if they eat any meals with their family. NO. They basically come out to grab food to go back into their bedroom or to go to the bathroom.

After talking with them, we challenged them. The assignment--Spend one hour a day, for the next two weeks, with your family.

They looked like they were sent to prison. Spend time with my family? I might miss one of the 80 plus hours of video game playing/television watching I do every week.

The longer we talked, this same student that spends zero time out of his bedroom, said he has asked his family to play boardgames with him, but they are the ones that say No. “They all like to do their own thing,” he said.

We told him, consider yourself challenged. The student got his ornery grin on his face and said, “Consider it a challenge.”

“Really?”

“I will always accept a challenge,” he said.

I could see in his face that what he really wanted was time with his parents. He wanted consistency and some connection time with something other than a television screen. Will kids go off into their own little world as long as we allow them? YES! Will they never come out of their room if we never grab a hold of them to come out of their Autism bubble? ABSOLUTELY!

They might want their bubble, but in reality, they love the feeling of structure and safety. After my dad died, my adoptive mom had to go back to work. I was left at home to get my meals, do my homework, and watch tv without anyone, many evenings. When I was left to this schedule for periods of time, I tended to act out more. I would have done anything for someone to make my schedule and help set up some boundaries for me. Safety is where people with Autism thrive. If we have an environment that has set rules and set expectations, we will follow them. If we have set times for us to spend with our family and eat meals together, then we will talk, connect, and maybe even help with making dinner. Putting dishes away with dad and cleaning up the living room with mom, while throwing a pillow or having a little fun brings connection and closeness to someone with Autism. This also allows them develop new interests and realize passions that they might not know they have.

People with Autism might appear that we don’t want this, but we really do. We crave structure, routine, and to know our safe people are close.

One of the students said, “Everyone in my family does their own thing. They don’t want to watch what I watch so I don’t want to join them.”

True. They should learn the give and take of sharing interests, but just as much as the family wants the person with Autism to join the family, sometimes, the family needs to join their world to get them to join the group. It is a give and take on both ends.

Non-negotiables and consistencies are welcomed in the Autism world. We seriously want rules! Open-ended situations, bring fear. Allowing someone with Autism to break even the smallest of rules, brings confusion, in our world. We normally will call people out on breaking a rule.

Are there times that a shift in the day is necessary? Absolutely! People with Autism have to learn that things happen and our schedules can change. That is not what I am talking about. We can still have a schedule change and have consistency in our core beliefs and rules. Set them and they will be not only be followed and provide safety, but anxiety will lessen while trust and growth occur.

“You should be a lawyer!” My parents used to say this to me at least once a week, usually in response to the fact that I really tend to dig my heels in for a cause. I have always liked to present the less-considered side of an argument. When I believe something passionately, I share that belief with everyone who is willing to listen. I believe in Autism awareness. I think fundraising walks are terrific. I “Light it Up Blue” every April. I wear T-shirts and jewelry with the puzzle piece logo. My license plate is the special edition Autism plate. I even have shoes with multi-colored puzzle pieces all over them. I really love when someone asks about one of these things and I get to share my passion for teaching students with ASD. On the less-considered side of the awareness campaign, are the actual individuals with Autism. To identify yourself with a “cause” or be defined by something people are trying to “cure” must really be disheartening. Of course, one’s feelings about ASD often depend upon where they fall on the vast spectrum of Autism Spectrum Disorder. For some, their Autism is the very thing that helps them succeed (think of engineers, mathematicians, and scientific researchers.) For others, Autism can be the factor that holds them back from being able to communicate with the world. When we spread awareness, we need to be careful that we are sharing information in a manner that is respectful to all and that recognizes the entire spectrum of ASD.Today in my Language Arts classes, I “passed a torch” to each of my students. I explained to them that the real awareness campaign begins with them. “You are the educators in this case. No matter what you decide to do for a living, whether you are a firefighter, game designer, or veterinarian, you will always assume the role of teacher, as well.” Who better to teach the world about Autism, than the very individuals who live it every day? I challenge my students to spread awareness every chance they get, simply by being themselves. “Talk to people about your Autism. Explain the things that are difficult for you. Express what you need to be successful in academic or social situations. Let the world see you at your finest!” Walks are great and ribbons are pretty, but there is no greater way to spread awareness than to become your best “YOU.” Not in spite of Autism, but because of it.Ann:

Have you ever had the chance to be a walking billboard? Is there a cause or something that you would like to or feel the need to represent? What if someone said to you, you are the representative of all those with blue eyes or Italian descent? What would you do? How would you want people to see you? What would your message be and would you be a great representative?I teach social studies and we have been covering the election process. We have studied all the candidates and the two-party-system. My students took a test to see what party they most agreed with and who they most likely would vote for, if they were of voting age. Living in a republic, they learned that we vote for those who represent us and our beliefs. We do not live in a direct democracy. We hope our delegates vote for the candidate that we want them to and trust them to be a true representative of who we are. There is no better representative of you, than you. If I had to choose someone with Autism to represent all of us, I most likely would choose a person with Autism that is most like me. That is how we normally vote for something. We look at the candidates and choose the person that has the same beliefs and actions that we do. I met Temple Grandin. I would say that we are very much alike in our belief systems. I really think that she is a great representative of my thoughts, feelings, and needs. Having Autism, I am a walking billboard for the cause. I want people to understand, when they look at me, what it really is and how best to help people on the spectrum. I want to be that teacher to kids with Autism and show them who they can be in their Autism. I want to show them that they can be the best themand be a mentor. I want to represent Autism, in a way that people see strengths, not weaknesses. I want them to look up to me as the example that makes them keep going when they feel down and defeated. I want them to actually say, Well, If Mrs. Kagarise can do it, I can do it. Every morning, when I walk out that door, I have a decision to make and mine is to always be the best representative of Autism that I can be. No, I don’t want to wear a shirt that says I have Autism. Even though, I have one. That is not what I mean, but I do want people who are not on the spectrum to look at me, and think WOW, I had no idea people with Autism could be so successful.Recently, we had a journalist from the Plain Dealer come to IDEA House to talk politics. Mr. Larkin has been the lead political columnist for that newspaper for over 30 years. He spoke to my social studies classes and he expressed how impressed he was, with our kids. He was so excited with their knowledge and expertise on the subject. He said he doesn't like to speak to groups that do not understand politics and then offered to come back several more times to engage in conversation with the kids. He wrote me, shortly after and said I have already contacted the Akron Beacon Journal about your students there. He said, “I’m not sure what I was expecting, but they were just amazing kids.”So many times, people with Autism get a bad wrap. We are walking billboards for the cause. We are the best representative of Autism that neurotypicals can have. We are the best example to those who have Autism, who are following, in our footsteps.One thing that we don’t want is a bunch of neurotypicals educating the community, with false information, about who we are and what we are capable of doing. Another thing, something that I absolutely hate the most, is when people assume that I am disabled and talk to me as if I am. I was at an event the other night, and someone talked to me as if I was disabled. Really?! They were even condescending in their tone as if I wouldn’t have even caught it. I am very capable and very functional. The only one who was ignorant, was that person. Not me! Take on the challenge of being the walking billboard of Autism, if you have it. Be the teacher to those who do not have it and be a leader to those who do.

I like to play video games! They relax me, but also appeal to my competitive nature. I play a game, check my score, and set that score as the one to beat the next time I play (even if it is by just one point.) I rarely look at the scores of the other players. I consider my greatest competition to be... ME. Sure, I like to win. Doesn’t everyone? More importantly, I like to improve. I apply this attitude toward most things in my life.Kids with Autism need to be pushed, tiny step by tiny step, in this same way. Each day, a new block needs to be laid to the foundation of their learning. But it needs to be done in a gradual and systematic manner. This applies to academics, social communication, and behavior, as well.In college, I worked in group homes as a caregiver and educational assistant. The greatest thing I learned through this experience was the skill of task analysis. Every task can be broken down into individual steps in a process. For example, tying a shoe can be divided into as many as 15 steps. I like to start my instruction for such a task, with the last step. This way a child is experiences the “final product” with pride from the very first attempt. I complete and talk a child through all but the very last step. The child finishes it off. When that skill is mastered, the child becomes responsible for completing the last two steps. This sequence is repeated until the child is able to independently complete all steps in the task. This is backward chaining and it is very effective! (Reversing the process is called forward chaining.)Teaching math or reading requires a great amount of task analysis. Generally, students come to IDEA House at different stages of the task process. It is important to accurately measure where instruction should begin. Because children with ASD have such variations in their academic achievement levels, age or grade equivalent becomes almost irrelevant. For me, instruction begins where the child “lives” in mastering the process. A child with ASD may be reading at a first grade level, but understand science at an eighth grade level. So we accommodate. Reading remediation can occur simultaneously with science enrichment. Those “peaks” in performance, also called splinter skills, are most likely where future employment exists. A child must be provided the opportunity to advance as far as he is able to in those areas of strength. The same theory can be applied to social communication and behavior. New expectations must constantly be added (the next step in a process!) If a child is able to sit quietly for 5 minutes today, we set the next goal at 6 minutes. We keep moving forward! Parents and teachers must learn to move past the “Aha! Moment.” We should not assume the child has reached his peak potential just because he has reached one goal or mastered a small part of a process. Keep teaching. Keep inching the finish line forward, even if by only centimeters.The “Aha! Moment” is when you discover something that works for your child. Should that small step be praised and celebrated? You bet! Should you allow the child to get “stuck” there? Absolutely not. A two year old who will only eat dinosaur-shaped chicken nuggets is not a problem. A fifteen year old with the same restriction is going to struggle in social situations.The longer a habit (or fear) exists, the harder it is to overcome. Those comfort zones need to be gradually expanded. If you want your child to swim at the deep end of the pool, you cannot let him sit on the steps year after year. Take his hand and ease him into the water. Support and encourage him in all things, but always remember the goal is for our children to swim through life independently. Ann:As a competitive swimmer, growing up I was always going against the clock. I remember when I was about ten-years-old and I was close to breaking that minute for a fifty free. Most might not know what that means, but in swimming, breaking that minute is a huge milestone. Every swimmer wants to break their first minute and get the high-fives from coaches, parents, and peers. Every tenth of a second improvement, meant that I was going to aim for a tenth of a second faster, the next time. My eyes were always on that clock. My coach trained me to know how fast I was going, in the water. I could literally feel if I was going slower than my best. I would look up at that clock the second I hit the wall and just feel defeat come over me, if I hadn’t even gone slightly faster than my last swim. In life, we are always aiming for improvement. A baby goes from scooting to crawling to walking. Kids go from tricycles, to bicycles, to eventually cars. Adults grow from their college dorm room, to a small apartment, starter home and finally graduating into a house large enough to fit their family.Growing and pushing is what we all do. It is the same for people on the spectrum. We all have a natural instinct to push one step further than the last. Having Autism is just a part of who I am. Using it as an excuse, to not be my best, is not ever going to be an option. I want to be pushed. I stretch myself each and every day. I break down the steps to a goal and find myself constantly analyzing how I am going to get there.I was not very coordinated, when I was very young. I couldn’t even button my own shirt until I was well into elementary school. I had a hard time learning how to ride a bike, but like anything in life, I was determined. When I was about 10, I got a unicycle. I had seen one and I wanted it. No one told me I would not be able to do it. I looked at it and said, I’m doing it. I would take it out on my back patio and practice for hours a day. I taught myself how to get on it without falling. I went a few inches, then a few feet, then I was going down the street. I joined a local unicycle club and eventually started riding in parades on the six-footer.I have told this story many times, but it is one that needs to be told. I taught myself how to learn. I do not retain or comprehend very well a lot of what I read and some of what I hear. I taught myself how to make it in school, regardless. I knew I couldn’t understand the text when I read it. I knew I couldn’t understand when someone read to me. I somehow figured out, at a very young age, if I looked at the text while listening to the tape recording of the text I had just read aloud, I could write down a simpler version of the text. I would study that until it was easier for me to understand. I stretched myself. Sometimes it would take me hours to do these steps. I just, simply, was never afraid of hard work.When I started working at IDEA House, Angi put me on filing papers and organizing the office. I wouldn’t even come out of the office, for the first few weeks. I eventually stepped out during a staff meeting. I stood just outside the door. Then, I gradually stood closer and closer and closer. I eventually sat down, in a chair that was by the staff meeting and moved closer, week by week. I went from just interacting with the kids, by taking pictures, to slowly complimenting or helping a student. There were times, that Angi flat out pushed me from small steps to feeling like I was just pushed off a cliff into something completely out of my comfort zone, but I gradually acclimated to those situations, as well. Now, as her assistant director, I empathize with the fear of growing, but agree with every small to somewhat large push, we give the students. After all, we expect everyone in life to stretch and grow. Having Autism shouldn’t make us any different than anyone else.

At IDEA House, we do things differently. As a result, our students are observably “different.” You could pick out an IDEA House student in a crowd of neurotypical kids. You would notice one of “our kids” right away. You may think I am speaking of the way their Autism makes them different, but I am not. I am speaking of the way their character makes them stand out.I taught in public schools for many years. I frequently visit schools for IEP or advocacy meetings. I have walked the halls and been present at times of class changes and dismissals. From elementary age on up, the hallways of a school are a great place to observe the true “Lifestyles of the Young and Foolish.” Much of what I have seen left me feeling sad.Name calling, pushing, running, swearing, and a whole lot of teasing are the first things I always notice. I see the less popular kids staying to the side of the hallway traffic, usually trying their best to remain unnoticed. I see a group of popular kids laughing at a student who has dropped her books. I see other students taking selfies or texting on their $500.00 iPhones. What is noticeably absent is any obvious signs of kindness, friendship, or respect for the teachers they zoom past. I think to myself, “The kids at IDEA House would never behave this way,” and I am so proud of that fact.When the students arrive at IDEA House in the morning, they walk in with a smile. They greet each other! They say hello to the teachers. The younger students almost always give hugs. They remove their shoes, hang up their coats, and place their lunches in the refrigerator in an orderly fashion. They are patient until it is their turn. They say “strange” things... like “Thank you,” and “Please.”After meal times, the students clean up their messes. At the end of the day, they all have assigned chores. They work and behave like a family; each student truly caring about the welfare of the whole group. In math class the other day, one of my students was becoming increasingly agitated as she tried to work through some difficult long division. As a result, she was short and even a bit unkind to one of the younger students in the class. I prompted her and reminded her to be respectful to her classmate. She continued to work with some seriously heavy sighs and some glaring looks at the younger student (who was cruising through the tough math work.) I turned my back for a moment to grab an eraser. When I turned back around, I almost could not believe what I saw. This younger student was leaning over the girl’s shoulder and very patiently talking her through the long division process, step by step. He didn’t choose to “fight fire with fire.” He didn’t even choose to simply ignore her glaring envy. Instead, he reached out to her in empathy and true friendship. When she got her problems correct, he patted her on the back and praised her hard work.I said I “almost could not believe what I saw.” I take that back. I was not surprised in the slightest. I see these kinds of heartwarming moments every single day. I witness older students acting as role models for the younger ones. I see students offering to help teachers carry heavy books or to clean up a work area. I see table manners (no one at IDEA House begins their meal until all students have been seated and have their food.) I hear students complimenting and encouraging each other. I see tolerance, patience, acceptance, and respect. I see love.That is what makes an IDEA House kid stand out in a crowd. The love and support they receive every day and the pride in their authentic accomplishments creates a certain aura around our kids that cannot be missed. They truly begin to radiate confidence and positive energy. In turn, they reach out to share that glow with everyone around them. If a “Battle of the Bands” type of contest existed, based solely upon the quality of students’ characters, I would put our group of kids up against any neurotypical group and know, without a doubt, they would be declared the champions.

Ann: Autism vs. Neurotypical classroom

When I walk into the classroom at IDEA House, I will tell you what I see as a teacher. I have been in classrooms, as a student and as a parent, in the public schools and I can tell you...IDEA House ROCKS above anything I have ever witnessed in any other school setting. I teach social studies and I can tell you what I experience, in a day. Kids. Not just any kids. Kids who are willing and eager to learn. Kids who want to please. Kids who are polite. Kids who help their fellow peers. Kids who do not bully. Kids who are patient. Kids who LOVE and connect and feel deeply. I see sensitivity. I see cooperation in a group and tolerance of all!At IDEA House, we literally have the spectrum of Autism. There is not anyone in our school that feels more or less than anyone else. There is not a person that feels that they cannot be who they really are, in a room full of their peers.Authenticity is encouraged. Being oneself is admired. The older kids mentor the younger while the younger almost idolize the older group. We are a hands-on school. The kids learn chores in a household setting. The older kids partner with a younger kid and they work as a group. What I love, is no one talks down to anyone. All that is seen is respect and a willingness to help and listen, in each of the paired groups.One student didn’t understand a chore. One of our students, who has been with us for quite awhile, took the other student and visually acted the chore out to help him understand. A courtesy and respect that was shown him, when he was newer.One thing we get a lot at IDEA House, is truth. There is not a lot of guessing with kids with Autism. They tell you exactly what they think and feel. Do you like this assignment? No, but I’ll do it. “I know. I was wrong. I was mean. I did a bad thing,” One student said five seconds after doing something he shouldn’t have. These are the types of behaviors that I see as a teacher.Our kids keep us in tears. I don’t mean sad tears, either. The kind of tears that one gets from laughing too hard or from warmth. Kids with Autism want a person to trust and connect with and once that trust is established, they will begin to thrive. Kids who have had bad experiences in other schools and have trust issues have a hard time learning. Once a child enters IDEA House, I give them a couple of weeks for trust to be established and growth occurs, very quickly, after that.I see kids who understand what it means to have a disability. They understand what it is like to be like the others in the classroom. Discussion is more frequent than what one would expect. They very much want to converse with their peers, laugh, and do “pranks,” as one of our students loves to say.I have been in enough neurotypical classrooms to know that I have witnessed bullying, disrespect, name calling, and a lot of unwillingness to listen or learn. I would take any of our classes and put them against any neurotypical class and I guarantee our classes would show a great deal more of respect, love, and tolerance. “I know what it feels like to be bullied,” one student said. “I am loved at IDEA House. Everyone treats me good here.” This same student came in, months ago, and didn't trust a soul. He didn’t want to listen or respect anyone because he was not respected in his past schools. Now, he loves everyone and is filled with hugs. He is learning above his grade level and helps teachers ‘tidy’ up the classroom, just because he wants to help.This is Autism. Sometimes, Autism gets a raw deal. The media portrays Autism in the negative. What I see when I walk into my social studies classroom is kids willing to talk current events, politics, and history. Their smiles shine through as they learn.One of the best compliments I could have been given was from a student, very recently. He was asked who helps him the most, at school. Mrs. Kagarise. He was to write down why. Because she gives me the answers, he wrote. I about laughed. Right after, I had him in class. I asked question after question. He knew every answer. I said to this student, “I am not giving you the answers. I taught you and now you know them.” He smiled at me. “You tricked me,” he smiled.Yes! I gave him the answers. He was FINALLY learning what he could not understand in another school setting. You simply, my dear student, are learning!! “But you tricked me to know the answers,” he said. Yep! And I think the real trick is you are becoming the most responsible, respectful, hard working child. Shhhh. Don’t tell him.

As someone with Autism who has gotten this far in life, when I blog, I like to focus on the positive reasons I have gotten this far. I wouldn’t be here at all if it wasn’t for determination, drive, perseverance, and some great people! However, this is a tough one for me to write about because I could not emphasis enough how those things came into play. I would absolutely, positively not be where I am if any of those things were not in place. I believe that is why I preach so hard to people with Autism that they CAN make it no matter what. First of all, you have to surround yourself with good people and take advantage of anyone you see who can help move you forward. The other three I listed, determination, drive, and perseverance come from within the individual. There are some days that I feel that I have run a marathon, but it has to be done. I don’t have a choice. Well, I guess I do, but not if I want to be successful. Something that people with Autism have to realize is that hard work is not an option. We have to accept, very young, that to get through a normal neurotypical environment and keep up with the world around us, we have to absolutely work harder than most of our neurotypical peers. We have to self regulate all day which takes an amazing amount of energy and we have to spend more time learning and doing what is expected. If people on the spectrum go into their day just knowing that the day is going to be filled with hard work, they will be fine. If hard work is avoided every time it rears its head, then it is just going to be harder going into whatever it is they have to do. One has to realize, the hard work is going to be there, so, either go into it willingly or go in kicking and screaming. Either way, it’s going to happen. The only way around is not doing it. That really, hopefully, will not be the option. With all that said, there have been associations in my life that have held me back. Big associations that I was not able to let go of. People with Autism can make associations that make no sense, at all. A woman with a red shirt could have called them a name therefore, all women with red shirts should be avoided. When I was 11, I was a favorite to win, in swimming. I traveled. I went all over the country, swimming in meets and I was normally in the fastest heat. The day of my 11th birthday, I was in Pittsburgh at a Junior Olympic meet. It was a biggie and I was favored to do very well. My mom and dad took me to a restaurant to celebrate my birthday It was amazing! It was one of those real fancy places. The restaurant announced I was there and who I was and the Maitre d' danced with me, in front of everyone who was eating. It was such a special day and I felt like a princess. My dad was my everything. That was such a special moment with him, as well. Three months later when I was at swim practice, he died. At 11 years old, with Autism, I made the association that because I was winning and doing so well, my dad died. The next meet I swam at, I won. They called my name and everyone was like go up and get your medal. Go up to the podium. I refused and I never won again. I eventually quit swimming because doing well in swimming was associated with my dad’s death.. I couldn’t do it. Working at IDEA House has been one of the biggest blessings to me. Working through a brick wall to get to the other side is hard. Having to realize that I sabotage when things are going well because I’m afraid to succeed, was a hard one for me. I kind of knew it, but I hadn’t reached the point of being able to really, really get to the other side of that and allow myself to win again. During my high school graduation, a close aunt died and no one from my family could come because the funeral was at the same time as my graduation. I also got my college diploma, but refused to go to the ceremony. There have been other instances, but through the years, I started to gradually allow myself to have small successes. I won a lot of awards in journalism. I wrote a book. I had some great jobs, but nothing has helped me get to other side of that association of my dad’s death and success like IDEA House. I have gone from office manager to assistant director. I have gone from not really able to speak to people to speaking in meetings and teaching social studies. I’m pretty proud of how far I have come, in these last years. I have heard student after student explain the bullying situations they have had in public schools, from peers and teachers. I have witnessed the association of being treated badly and school. I have watched the kids break through those huge barriers and start to trust again at IDEA House. I have watched them smile and succeed, again.In a safe, trusted learning environment, like IDEA House, kids with Autism and adults, like me, with Autism can have permission to grow past those negative associations they have made in the past. Thank you IDEA House and Angi Shumate, friend and fellow brick breaker for helping me get to the other side.

Angi:

So I’m driving down the road and a song by Journey comes on the radio. Suddenly, I am back in high school. As I am belting out the words to “Don’t Stop Believin’” I am, for just a moment, back in love with my high school boyfriend, on my way to the Friday night football game, in my cheerleading uniform with the biggest hair on the block. All those sensations rush in and last for a nanosecond, but they come in so strong!I look in the mirror and I am once again my current self. I am a middle-aged mother of three with a job, a mortgage, more wrinkles that I am happy about, and I am fairly certain the world is grateful I am not wearing the old uniform. I have these experiences frequently. The smell of chlorine immediately takes me back to summer vacations by the pool. The smell of spaghetti sauces provides me a moment’s visitation to my grandma’s Italian kitchen. Certain aftershave scents bring about an image of my dad, just the way he looked when I was a child. These are all very pleasant associations. They are brief, I recognize them for what they are, and I simply enjoy those tiny trips down memory lane.For students with Autism, associations can take on an entirely different meaning. Because a person with ASD can have such heightened sensory input, many more associations are created. It does not take such a large sound, scent, sight, or tactile prompt to create that feeling of “flashback.” Because a person with ASD experiences everything with a greater sensory experience, sorting through which stimulus created the association can be very difficult. Sometimes those associations can be confused. If a child fell down and scraped his knee riding a blue bike, it would make sense to most of us that he associate the bike with the injury. However, the possibility exists that a wrong association was created in that moment. Suddenly the child may exhibit a fear of everything blue (reminding him of the bike.) He may become terrified at the sound of a lawn mower (because the neighbor was cutting the grass down the street when he fell.) Cheerios may be added to the list of “banned from the diet” foods, (he had them for breakfast that day.) It takes some real detective work to decipher the details of another person’s associations. As Ann mentioned, students who come to IDEA House often have a large number of negative associations in response to previously unsuccessful school experiences. For one student, the word “school” creates huge anxiety within him. He will even say, “No school! IDEA House!” His is an easy association to accommodate. For other students, their fears are not as easy to identify or alleviate.

At IDEA House, we do a special Autism Awareness unit in April of every year. It is one of my favorite lessons to teach and a time of year I learn so much from our students. (In actuality, every day at IDEA House is Autism Awareness Day, but the intensity of our lessons and discussions increases in April.) It is an honor to help children learn about their Autism, but it can be a long, emotional process!

The process of self acceptance is a difficult one for all people. It begins with the “terrible twos”, progresses to teen angst, and is epitomized by every young adult who has ever gone off to “find himself.” For most of us, it is an everlasting pursuit. Imagine (or remember) your own experiences in this journey. Now imagine you have been identified with “Autism” , and all you know about it is what you hear your parents whispering. Maybe you even have family members who, from lack of understanding, think you are “being bad” or are “just spoiled.” Enter in a teacher, coach, pastor, or neighbor who bemoan how difficult it is to include you in things. Is it any wonder our kids are confused or even self-loathing?Talk to your child about his Autism. My advice to parents is to start when the child is young (or first diagnosed.) For younger children, keep the explanation simple and matter of fact. “Autism describes the way your brain, body, and words work together. Autism can make some things a little tougher for you to learn, but it can also bring you wonderful gifts and talents.” Talk about those struggles. Talk about those gifts. Talk to your child; not about him in front of him. Don’t whisper the word “Autism.” Say it with pride the same way you talk about his beautiful smile, great sense of humor, or artistic ability. For older children, you need to listen as much as you need to talk. You may be surprised to hear what your older child thinks Autism is (if he has not been educated from the start.) It makes me incredibly sad to have teenage students ask me what Autism is. Although I am honored to be able to help any student, I am sad for a child who has spent years not knowing the details of something that is a huge factor in his own life.Today, in class, we watched the video, Just Like You. I prefaced the showing with the following reminders: Autism is different in each person. Autism is a spectrum disorder. You may relate to none, some, or all of what you see. The students (even the high school aged) watched the movie with great interest. Then they talked, a lot. They talked about their sensory issues. They talked about feelings. They asked questions and then they talked some more. One student (who had previously been very resentful at having been diagnosed at a later age) spoke with pride about shutting down an online gamer’s negative remark about Autism. Another spoke about how his intense interest in video games may translate into a career. Another spoke about the way paper smells different, depending upon its age. Wow. Who knew?I spoke about my sometimes envious feelings for the way so many of my students see the world with such clarity and beauty. How I wish I could remember numbers or notice patterns the way some of my IDEA House kids can. I told them how privileged I felt to be sitting in a room full of individuals with such unique, complex thinking styles. Every single one of them beamed with pride at that statement. We acknowledged that Autism can cause some things to be more difficult. Simply acknowledging that fact makes it so much easier to accept.Autism does not have to be the “elephant in the room.” It can be the rainbow in the sky, the melody in the music, the mosaic in the museum. Your child’s first perception of himself will come from you. Be sure you give him the proper framework for the amazing creation he is.https://www.youtube.com/watch?v=S0w6carvS8k Just Like You

Ann:

You have Autism...Words that instantly go through the brain like a bullet. The day you look around and wonder if everyone in the room can notice that you are different. Different? Huh. That’s a word. I always hear the phrase, Different, not less. That is easy to say from those who don’t have it, but Temple Grandin is the one who is quoted for saying this.. One of the first things people want to do when a loved one is diagnosed with Autism is research people who have Autism that have made it or seem as if they are ‘normal.’ Well, Einstein made it. Edison was successful. Look what Bill Gates has done.The invisible disability. The one that can only be seen with trained eyes or judging eyes. I always knew that I had something. Neurologists said I did. Teachers said I did. My parents said I had disabilities. Even the word, disabilities, makes it sound negative. The day I realized that my differences, my differentabilities were, actually, my strengths, I saw my Autism as the best part about me.Being the invisible one in the room was an art. I had that artform, down. There is a movie where a nonverbal girl was left in a play therapy room. While all the adults were talking behind the two-way mirror, she painted herself into the wall. The adults rushed into the room looking for her. The only way they saw her was when she opened her eyes and blinked. That is and will always be one of the most transforming moments to me, in my Autism.The adults were all running around trying to find her. They were all trying to see her. They all were frantically trying to figure out her world. The point was... she was fine. She was content in who she was. That was her way of saying, while you guys try to figure me out and see who I really am, I will just hang here and be who I am. I am communicating to you. I am telling you exactly what I am thinking and feeling. I am the artist. I can do and see things that you are not able to even see. I got this. I am not the one with the issues. I am creating this wonderful world that I live in. It is powerful and visionary. It is solitary, but yet inviting. You want so much to figure me out and try to see where I need help or write lists of what is wrong or different about me in my Autism. While you try to figure out my weaknesses, I am building my strengths and just being me. The world sees Autism as weak. I only see it as beautiful, passionate, and strong. I see it as a lens into a world that many do not have. Those with Autism are some of the most creative, out-of-the box thinkers. While many want us to conform, squelching our abilities, putting us into cookie cutter type molds, we begin to see ourselves as different. When in fact, there is not a person that I know that learns the same, talks the same or has the same exact ideas, abilities, and drive. Every single person is different. What makes those with Autism the ones who have to accept their differences? That alone, makes people with Autism wonder what is wrong with them that I need to accept?Does Acceptance mean that there is something wrong with me? Who decided that? That girl that painted herself into that wall was just being who she was. It took her creative communication and her contentment in her world, for people to realize that there was something amazing about her. It has to take an Einstein for someone to think Autism is amazing. There has to be a Mozart savant or a Edison for people to say, “They are gifted.” While we are being who we are, people are scrambling around trying to figure out what is different about us, what is less about us, what we need to change/fix, while we are painting ourselves into the wall with the most creative, confidence of just being who we are. Who really needs to accept that we have Autism? Does the way society view people with Autism cause a stigma? Do people with Autism have to accept that they have it or does society make them feel as if there is something wrong with them so they have to accept society's perception of them?

Recently I threw a baby shower for my daughter. She wrote me after, “Mom, that was not a baby shower, that was an event.” I was so thrilled that she loved it, but most importantly, I was thrilled that I accomplished it, for her. There were many people, at the shower, that stated to me, they had no idea I could do that. What I know is, if I set the bar, I will reach it.When I was a kid, they said I wouldn’t graduate high school. I literally heard my adoptive parents and doctors talking about the irreversible brain damage and that it did not look good. The best thing that my parents did for me was NOT baby me. They put the same expectations as they would have any other child. After I got my masters degree, my kindergarten teacher came to my graduation party. She was so proud. She knew where I started and supported me through my entire schooling. She told my adoptive parents, when I was five, “There is something really wrong with Ann. She needs to be assessed.” The neurologists thought they knew my limitations, but they never figured in my determination. I raised my own bar and I reached it.I was told I would not hit a baseball because my eyes do not converge and I don’t have depth perception. I hit homeruns. I practiced for hours a day until I could meet the bat to the ball.I was told I wouldn’t be able to ride a bike. I rode a unicycle in parades.I was told I would never drive. I drove a postal service vehicle with the steering wheel on the opposite side of a car and I have also driven trucks. When I went for my testing at the post office, the doctor said, “You really don’t have ANY depth perception.” I begged them to let me drive. I drove perfectly and they actually asked me to stay on as an employee after my summer job, with them.I was told I would not be able to communicate well. I did not speak until I was three and I was considered an elective mute, years after that. Now, I teach social studies classes and talk to parents, in meetings. There are times my voice wants to cut out, but I have learned how to overcome. I never let my brain tell me what my limitations are. I find a way around it. From reading into tape recorders to understand the text to taking five hours to do homework when it took my peers an hour... nothing was too difficult. No expectation was too high. If I set the bar, I hit it.As a swimmer and swim coach, I always told my swimmers to mentally picture where they want to be in their mind. I told them to picture themselves diving into the water, stroke by stroke through their event. I told them to picture every flip turn until they came into the wall hard...of course winning. The kids I coached made it to Stanford, U.S. Olympics trials, and on the actual team. They made it to many major colleges and did well academically. I believe in making, it no matter what, and disabilities should never be an excuse for a limitation.If a child hears a parent, teacher, or doctor say they will not be able to do something, they unfortunately just might prove them right. They might find that determination and drive within themselves to do it, but they also might use their advocates’ excuses as their own. The best gift that anyone can give someone with Autism is the belief that they can. To not give them any excuse and to not ever say in front of them, “but they have Autism.” My dad died when I was 11. My adopted mom had to go to work. I became a latchkey kid. An 11-year-old with Autism, on my own, until very late. I came home and had my routine. I had the quickie TV dinners, every night, but I did it. I put my own dinner in and did my homework. The best thing that happened to me was my dad passed away and I was forced to be on my own and find ways to make it, regardless of disabilities. Some might not understand that, but it caused me to be strong and find a way, by myself, around every obstacle. I still, to this day, will do something a hundred times if I have to. I am the Thomas Edison of Autism. If it doesn’t work a thousand ways, I will keep going until I find a way. Oh, it is believed that Edison did have Autism, by the way. So, people with Autism will go as high as you place the bar. They will reach as high as their own expectations. No excuses. No allowing I can’ts. Expect and they will do. The worst thing you can ever do for someone with Autism is allow them to have an excuse for being babied or not owning behaviors or allowing them to not reach their goals. Oh, one more thing. As someone who grew up with abuse, foster homes, post traumatic stress, failure to thrive, adoption, death, more abuse and having to raise myself the majority of my life with Autism as the cherry on top, there seriously is never an excuse to allow any of the above, in any combination to be a reason for a child with Autism, to use that as an excuse to not move forward. If I can do it, they can too. Just set the bar and they will reach it. Don’t ever let them hear you use anything as an excuse for them to not be their best. The best gift you could ever give someone with Autism is BELIEVE that they can without ANY reason for them not to.

Angi:

We have become a society of labels. We are categorized, sometimes even victimized, by the ways in which society perceives us. We are a nation of victims, in so many ways. We have individuals who sue for spilling hot coffee on themselves. We have college students begging for “safe” spots in which they can be free from hearing opinions that do not match their own. Everyone gets a trophy. Everyone wins. Every one of us is such a special snowflake.Society’s views have changed so much over the 20+ years I have been teaching. Focus has been drawn away from accountability and toward nurturing a child’s self esteem. Twenty years ago, if I had informed a parent that their child had harmed another child, that child would have had pretty severe consequences at home. Today? A parent will ask what the teacher has done to create anxiety in the child, to make him hit another student. The child will likely be rewarded at home, in the days following, for managing to make it through a school day without hitting anyone. We are setting the bar very low for today’s children, all across America. Our academic expectations have increased (in some cases being so difficult as to be developmentally inappropriate.) Our kids are competing: in sports, music, dance, and organized activities, by the age of three. Children are given expensive electronic equipment as “toys.” Movies with adult themes (even the beloved Star Wars) are being mass marketed toward children. Children socialize through Facebook, Twitter, SnapChat, and other electronic formats. They are being given adult privileges without any expectation of adult responsibility.Conversely, the lessons of “growing up” are not present in American families, the way they used to be. Table manners, respect for authority, personal responsibility, chores, and personal faith are all considered “old fashioned” and are rarely emphasized in the home or schools. Parents go to any lengths to protect their children from learning the lessons of winning and losing, of experiencing failure, of ever being “wrong.”Add Autism to the mix and the protective urge multiplies tenfold. While we have come so far in understanding the nature of disabilities and have made huge strides in acceptance and inclusion for all, we have taken a huge step back by forgetting the ability in the term disability. In many cases, we accommodate to the extent that we disable a child to a greater degree than is necessary or appropriate. I tell parents, all the time, a child will not seek to outperform a parent’s expectations. If you ask him to clean 10 items in his room, a child will rarely decide to clean 12! (In fact, most will clean 8 and then declare the job “finished.”) When you constantly set low expectations or do a job for him or make excuses for inexcusable behavior, your child hears the message, “I am not capable. I am not able.”Children with Autism can do amazing things and will do them, if they are encouraged and expected to. Children who are taught accountability become adults who are employable. Employable adults are happier, healthier, and more able to live independently. Isn’t that what every parent wants for their child?Don’t wait to teach these lessons! It is never too early and no individual is ever “too disabled” to learn the basics of life. Listen carefully. Respect yourself and others. Cooperate in a group. Do your best. Never give up. These are the rules for my classroom and for IDEA House. I have perfected them over the years and have never encountered a situation in which they were not pertinent and applicable. In every interaction you have with your child, ask yourself if you are expecting him to follow these five rules. If you are not, ask yourself “WHY?”

When I was a new “mom”, I worried. I worried a lot. If my son got a bruise, I was certain he had leukemia. If he had a rash, I was convinced it was flesh-eating bacteria. A fever? Well, do people still get the Plague? It didn’t help that he got sick quite often. His immune system was weak when he was young, so having that somewhat valid excuse to worry made me jump to the wrong conclusions, every time.

Our pediatrician was a very experienced, very wise man. He was also very patient with me, (I now see in hindsight!) One day, he sat me down in the office and said these words to me, “Mrs. Shumate, when you hear hoofbeats, think horses, not zebras.” Those words changed my life. That philosophy has greatly impacted my teaching style and has allowed me to experience great success in working with students with Autism. A child, teenager, or adult with ASD is just that: a child, teenager, or adult first. Some would argue that semantics are not that important. Others angrily state, “I am an autistic adult and proud to be so!” To each his own; but for me and my IDEA House staff the Autism is secondary to the individual. Period.Having a bad day, being in a disagreeable mood, breaking a school rule: those are the horse hoofbeats of life. To attribute every single thought or action a person experiences to ASD, is to invalidate the individual as a thinking, feeling human being who will have the same ups and downs as any other human being on the planet. To fail to have high expectations or fail to hold a child accountable for his actions because of ASD is to let the zebras take over.Many parents, over the years, have been resentful of a consequence or withholding of rewards when their children misbehaved or did not meet an expectation. “But he has AUTISM!” I have heard this so many times. Yes, he has Autism. He also has blue eyes, brown hair, and freckles. He still threw a pencil.Is this simplifying things? Of course, to some degree, it is. There are many factors that come into play when providing the highest quality education program for children with ASD. Environmental adjustments, accommodations, specialized instruction, and clear/concise communication are all vital components. But when those supports are in place and a child is still struggling, try to think of horses when you hear those hoofbeats!Ann:I am many things. I am the assistant director at IDEA House. I am a teacher of history. I am a mom, a grandmom, a wife, and a friend. I am a swimmer, an artist, a lover of books and music. I am a photographer. I love animals and have a heart for the elderly and people who are hurting. I have a degree in social work and counseling. I have a masters degree.I have been around the country. I am an author and a journalist for newspapers and magazines. I have been a swim coach, a director of a battered woman’s shelter/rape crisis center, a counselor with women at a local jail and with kids who have been abused. I have been a speaker, advocate and blogger. I am Italian. I have blonde hair and blue eyes. I was born in Cleveland, Ohio. I am adopted. I have adopted two children. I love the Disney Channel. I still sleep with my teddy bear. I love mustangs. I love planes. I love binge watching television shows while playing games on my computer or phone. I love to take walks. I love to breathe in ocean air. I love to watch the waves of the ocean and stare at the peaks of mountains.I love. I hurt. I cry. I love the simple things in life. I am one to look for the positive in any given situation. I am determined and a hard worker. I have experienced life, loss, and death. I am responsible for my behaviors.. I am responsible for myself. I pay all my bills. I am my own self-advocate. I am strong. I can make good choices. I can choose how I handle negative, around me. I can be a mentor and offer hope. I can keep my cool. I can keep my job. I can make appointments on time. I can handle a heavy workload. I can multi-task. I can offer an ear to someone who needs to talk. I can offer ways to overcome. I can be a peaceful presence. I have Autism. With all that you see, written about me, what will you remember most?

Angi: Years ago, a concerned grandmother asked me for advice in helping her grandson, who was newly diagnosed with Autism Spectrum Disorder (ASD.) As I had never met this little boy, I struggled as to give the best “universal” wisdom. It took me just moments to decide the easiest strategy to achieve the greatest results: Keep It Simple (Sweetheart!) Research has proven that individuals with ASD need a tremendous amount of exposure to spoken language. I would add a qualifier to that statement by saying kids with ASD need a tremendous amount of exposure to meaningful and exact spoken language. In short, the best advice I can give is to say what you mean and mean what you say. Oh, and do it in as few words possible. Speak in the affirmative. Leave off the frills, and your friend, student, child, or loved one with ASD will receive your message more clearly. For example, instead of telling a child, “Do not run!”, tell him what you wish him to do. “Walk.” This is great advice for a number of reasons. First, as any elementary teacher will tell you, “Do not run!” leaves any number of alternate travelling options open to a young student. Picture it. “I didn’t run, Mrs. Shumate! I hopped! “ (Glided, soared, leaped, flew... you get the point.) Second, people tend to hear the first or last word of a direction most clearly. In the example above, you still end up with a child who is running. Too much explanation will wear down the processing skills of most people with ASD. Speak and wait. Then wait some more, if you need to.In a follow-up conversation with the concerned grandmother I mentioned, she reported the most amazing results using this simple strategy. She raved about her grandson’s improved ability to understand. Knowing what I do about the innate intelligence present in most individuals on the spectrum, I simply smiled and kept my true thoughts to myself. Inside, however, I firmly believed that the grandson’s skills were strong all along, it was the neurotypical adults in his life who had gained the “improved communication skills.”Ann:Recently, I did a podcast. One of the individuals I was talking too, rambled to the point that I had to completely stop and say, ‘I can’t do this.’ Words. They can sound like a buzz. There can be so many that someone with Autism doesn’t hear any of them. By the time this person had said one sentence, I lost it trying to listen to his next. He went from topic to topic and I was still trying to process the first.When I teach my social studies classes, at IDEA House, I teach the way I learn. A teacher, in tenth grade asked me why I was the only one not taking notes. “I don’t know,” I responded. I really didn’t know how to answer her, but I do know that I couldn’t understand a word she said when she taught. My homework consisted of several hours of reading out loud, into an old-school tape recorder. I would play it back, breaking each sentence down into very short phrases so I could better understand the material. When I teach, I put very specific words and phrases on the board. Short, but direct. No confusion with lots of room for processing.What I would have done for a teacher to recognize this. I knew what I needed, but it was something I had to teach myself. I have always had to find ways to learn because not learning, was not an option. I wanted that grade. I was determined. When I’m in a conversation, I do fine with one person. The more people that are added and the more buzz in the room, the MORE I do not hear. Words become floating thoughts with no semblance of order, the more someone talks or the more people in the conversation..A person with Autism might simply not understand. It is not that they are being noncompliant. When I was in school, I would get accused of copying, but I was only simply trying to see what the directions were. Keep it simple! Be direct! Be specific!

By Ann KagariseAngi and I can finish each other’s sentences or shoot a glance across the room and know exactly what the other one is thinking. We can go into any situation, in or out of the school and simply pass the baton without the other one looking. We just know. You would think that we had the same makeup, but one of us has autism and one of us doesn’t. I guess I could say she is a neurotypical or maybe, “one of those,” but even though we come from different molds, we think exactly alike. They say opposites attract, I guess in this case, that is true. There is not a student that does not sit across from us in any given situation that we do not have a general idea in how to reach them. What I like about us is that if one way doesn’t work, we find a way that does. Our favorite student is the one right in front of us. We simply love to change lives and reach kids that were not able to be reached in ‘typical school settings.’IDEA House was formed with Angi’s knowledge and experience from a public school setting. She believed that students with autism were falling through the cracks and she knew there was a way to reach them. A couple years into the formation of IDEA House, Angi’s concept continued to grow. Students were growing and Angi needed more staff. That’s when I came along. I wrote a feature on IDEA House as a journalist, for a hard print newspaper. A year later, we ran into each other at a camp we were both volunteering at and boom, she asked me to work in the office.I wish I could say she hired me for my expertise that day. I wish I could say she knew my degrees, my knowledge in behavior and my drive to reach kids who are hurting and or lost in the system. All she knew was that I had disabilities and I was leaving the newspaper business.I could say the rest is history, but what a journey. The world of Autism is as straight as the line on Charlie Brown’s shirt. For whatever reason, we just work. The two of us come from two different brains, but we think exactly alike. Behavior is our expertise and connection with the kids is our passion. Autism fuels our souls. I am her assistant director now. I have grown a little bit past filing papers in the office. I am confident when I say there are no two people who work so well together. We are the two puzzle pieces that aren’t supposed to fit together, but we complete the puzzle. We are an autism expert and an individual with autism that can simply get down on their knees to reach a child any way we need. We will hug, cry, or let a child rant if we need to. We will hold steady and be consistent and stand firm in all we believe. We know and understand what someone with Autism needs. We believe in the philosophies of the school without wavering. Our love, expertise, and passion helps hurting kids with autism, thrive. Upon even the shortest observation of the two of us working, you will have to notice the subtle nod or meeting of the eyes, but without a word, we know exactly what to do. We know which one is going to talk and what they are going to say. We know who should play what role in any given situation. We know who needs assistance and who needs us to disengage. I’m not sure if it is that I am turning Angi into a person with Autism or she is turning me into a neurotypical. But one thing I do know, we know Autism.